Solidarity and reciprocity in data governance: information sharing among gamete donors and recipients

Abstract

Abstract Background Decreasing fertility rates have spiralled a growth in demand for assisted reproduction technologies, including reproduction through donated gametes. Gamete donation is grounded on solidaristic practices traditionally focused on the gift of gametes. However, solidarity and reciprocity between donors and recipients may also be enacted through the sharing of other types of information (e.g. donation outcomes, medical and identifying information). Little is known, however, about these stakeholders’ preferences regarding information sharing, which is crucial to promoting people-centred policy for data governance in gamete donation. Methods A self-report structured questionnaire was completed by 69 donors and 161 recipients (participation rate: 77.4%) between July 2017 and April 2018 at the Portuguese Public Bank of Gametes. Opinions about access to donation outcomes and medical, extended profile and identifying information about recipients, donors and children were analysed using descriptive statistics. Results Most participants considered that recipients should not have access to donors’ identifying (92%) and extended profile (79%) information, but that they should access donors’ medical information (58%). Donors stated more frequently that they should receive information about the outcomes of donation (e.g. pregnancies and births) than recipients (32% vs. 12%). Participants also disagreed with donors’ access to recipients’ medical (83%) and extended profile information (92%) and children’s identifying information (98%). Conclusions People-centred policy on data governance in gamete donation should be informed by donor and recipients’ preferences. Sharing donation outcomes with donors and medical information from donors with recipients can foster solidarity and reciprocity between them. This requires the development of a matching mechanism (via consent) to accommodate their preferences. Key messages Policy on data governance should be informed by gamete donors and recipients’ preferences. Sharing desired information with donors and recipients can foster solidarity and reciprocity between them.